How to Embrace Life When It Turns Out Different Than We Expect

What to do when a LEMS diagnosis leads you on a different path

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by Lori Dunham |

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If there was a motto to be found among the Lambert-Eaton myasthenic community, it would be this: “When life gives you LEMons, make LEMonade.” This refrain encourages us to take the bitter parts of life and make something sweet out of it.

The bitterness of a rare disease diagnosis is hard to swallow. Once we process what that diagnosis means for our lives, we can choose to linger in the acridity of it all, or we can look toward the glimpses of goodness still present in our lives.

For those of us who have been touched by Lambert-Eaton myasthenic syndrome (LEMS), we understand all too well that life doesn’t always turn out the way we thought it would. Oftentimes, LEMS alters career paths. It hinders our hobbies. For some, it changes the trajectory of our relationships and future goals.

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When our daughter Grace was diagnosed with LEMS at age 14, we had no idea what her future would look like through the lens of a rare disease diagnosis. We knew that it was life-altering, but what did it mean, exactly? What would her future life look like? Would LEMS hinder her progress through high school and into adulthood?

These were questions that bombarded my every waking moment. Over time, I learned that the trajectory of Grace’s life would most likely look different because of her LEMS diagnosis. I have come to the resolution that this is not a bad thing. It’s just different.

Adapting to the learning curve

There is a learning curve when it comes to accepting unmet expectations in life. It was imperative that I shift my expectations and embrace the atypical parts of her story. I needed to do this to help Grace successfully move forward into adulthood.

For us, that means hitting milestones a bit later than most her age. Driving will happen, but it will take more time than it does for others. High school graduation will most likely be delayed by a year. That is because Grace lost almost a year of schooling when she first developed LEMS symptoms during her freshman year of high school.

Different is not bad, it’s simply not ordinary. I’ve had to fight against society’s view about when teenagers should do certain things and accept that our path is unique.

Now, I am thankful for another year with our daughter under our roof. I make the most of the opportunity I have to drive her from place to place. Soon enough, she will be out on her own and I will miss these moments. Today, I embrace that which is different, knowing this is a season of life to savor.

In what ways does your life look different than you thought it would because of a LEMS diagnosis? Please share in the comments below.

Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.


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